(I posted this as a comment in another thread last week, but to be consistent with my 3 and 6 month reports, I repeat it here.)
There are a lot of body movements and functions (balance, walking, vision, speech, bowel function) that requires both sides the brain, so performing the procedure on one side will not resolve all movement disorders. In other words, some of the relief I experienced initially which has reverted are those symptoms which are controlled by both sides the brain.
PD is still gone from my left side. No tremor at all in my left hand. Back pain & dystonia still gone on my left side. Facial mask is gone.
My walk is only slightly clumsy (undetectable to strangers) and my left arm swings.
I do experience stiffness and rigidity after sitting a long time. I sometimes have minimal jaw tremor
Turning over in bed was much relieved post-op, but is difficult again.
Constipation was completely relief for exactly 2 months, but is now as problematic as it was pre-op.
My right hand tremor has worsened considerably. That tremor is conveyed up my arm and through my shoulder making my right shoulder painful and limiting its range of motion. I cannot use my right hand for anything. This tremor interferes with my sleep.
A few friends & my children whom I had not seen since before the procedure said the post-op improvement is immediately obvious, that my body is relaxed.
My wife feels I have become slightly less steady over the past few months. Gait initiation was a problem pre-op, improved post-op, is now an issue again, but not as bad as pre-op.
As of 2 weeks ago, I take 3, 25/100 IR per day and often a 50/200 ER Sinemet at bedtime which do little or nothing for me.
I have no mental or psychological issues, depression, bouts of sadness, or hallucinations. My memory could be better, but it’s not bad.
I am keeping an open mind that it will not stop the progression, but I believe it will or will dramatically slow it at minimum 5 years, which is good enough for my decision.
As you may know, PTT lesioning is blocking an over excited signaling pathway between the pallidum and the thalamus. If symptoms reappear 5 to 10 years from now it may be because the brain has created a workaround pathway or expanded the original pathway which might also be eligible for lesioning.
Nobody knows whether or not lesioning will preclude future pharmaceutical or stem cell breakthroughs.
I'm 74 and believe I will likely die sometime in the next 10 years whether or not I have Parkinson's. The next 5 years are more important to me than are the following 5 years. I have a brother 4 years older who is dying of leukemia. At some point, we need to stop planning for the future - and live in the present.
I am happy with this decision.
Hope this helps.
Marc
PS. We are tentatively scheduled for the 3rd week of April at SoniModul which we will push back if Covid is still raging out of control -- unless we get a vaccination.
PSS. If this were not available to me, I would explore DBS.
Marc
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Love your perspective Marc, and you in providing context and detailing our your personal experience, taking the time out, helps many with deciding their own path.
I hope you continue to do well and improve on the symptoms that you are struggling with...
Any thoughts on getting the other side done as well?
I am so glad to know you. You are the very heart of this group and your kindness and great organizational skills are always shining though and helping others. Best wishes for a successful second FUS!
Pmmargo, you nailed it! Well said. Marc, you inspire me every time you comment or write a post. I'm eager to see you virtually symptom free next summer on the patio of W.A. Frost & Co. As you told me just before we first met, I'll be the one with Parkinson’s." You'll be the smiling, caring role model without any symptoms. I have never met another human being who has given me such hope and belief that PD will not defeat me.
Thanks for your update, Marc. Your attitude is admirable and an inspiration to me. I worry too much! At your next appointment, whenever that happens, are you considering getting the second side done?
Yes, we are planning to have the other side done 3rd week of April unless Covid is still raging, then will wait till it's under control or are vaccinated.
Thanks for the update Marc, glad you are still feeling good apart from some of the symptoms being difficult. Hopefully they ll be ‘fixed’ on your second procedure. I as well as others look forward to these updates which are so informative and make us realise that there can be light at the end of a PD tunnel.
My 3 children are around him, but they can't go in to see him either. They are taking turns leaving meals on his front doorstep and waving thru the window.
I had on and off times and I was accepted for FUS. As long as you aren’t finding that medication reliably helps with your symptoms then you are considered a potential candidate.
Thank you Marc. Your frankness is refreshing. So sorry about ur brother, i lost my littlle brother 6 weeks ago to heart attack at 55- devastated is the word, puts everything else on a different plane. Like u i dont worry about to far ahead. Live for now. God bless.
I have been reponsive to Sinemet in the past but I now spend most of day off, I didn’t realise that would rule me out for getting than procedure, Ibelieve thatmalot of my symtoms. Are due to the sinemet and if I was able to reduce them things would improve a lot
Connie, I feel it would be a mistake to rule yourself out. If you do not qualify, let them make that decision. I don't believe we should try to interpret their criteria so precisely. I believe there are people who have qualified who did not think they would.
Heretofore, I've taken it as needed (when going out) and recently I thought I would try it on a consistent basis, which is the way it is suppose to be taken, to see if that makes a difference. So far, it hasn't.
Thank you so very much for this detailed report on your 9 month report. This is so helpful for all of us. I pray your plans are not disturbed in April and am anxious to read about your experiences after bilateral ablation.
Like many others, I am grateful for your taking the time to give all these details about this new avenue for pd relief of symptoms.
I don't see your life ending in 10 year; there are lots of 100 year old men and women doing workouts, weight lifting, hiking, etc! Have a look on YouTube, they are amazing as I am sure you will be! Lol
Concerning :
" If symptoms reappear 5 to 10 years from now it may be because the brain has created a workaround pathway or expanded the original pathway which might also be eligible for lesioning."
It's the first time I see this info. Is that from Dr J? Is it from one of his papers?
Thank you for reporting so thoroughly and honestly about the procedure, your results and your philosophy about what you want to get out of it. I also really appreciate your contribution to this group. Thanks for opening up discussions. I can’t wait to hear how you do after your right side is done.
Thanks for the update Marc. I must be more organised and list my improvements and symptoms, for the clinic, for myself and for other PWP who feel life is not tolerable with these symptoms anymore.
I'm still feeling good after the surgery although right now I have a tooth infection so not feeling too great. But it's such a relief to be able to walk normally again after 20 years.
The surgery is Feb 10. The preop is the 8. We are planning to go 10 days in advance in case of sudden mandatory quarantine. Reading you and Lena, I constantly think of how good I will feel in a couple of weeks!
I am very happy for you, you had to wait for so long. You must feel so good!
Are you able to avoid stress like dr j recommends after surgery? Are your sons understanding and supportive?
I am so happy for you and everyone who has had success with PTT. It's the best thing that has happened to PwP until there will be a cure. Take care of yourself and keep us posted on your progress.
Lol! I wish I knew how to split the screen, other than with an axe, so I could show the two of you side by side and the forum members could then decide!
Lena is enjoying not shaking all the time. Working on getting my strength back after almost six years of symptoms. I am eating too much and want to sleep a lot!
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